August 8th – Severe ME awareness day

Today is Severe ME awareness day. This day is dedicated to the people who have sadly lost their lives to ME and the 25% of the 250,000 sufferers which are severely affected. This means that they are wheelchair, house or bed bound for long periods of time and suffer with severe pain which even morphine based drugs don’t fully touch. Paralysis is another common factor for severe sufferers. I am in the severe category, and I have suffered a lot of paralysis over the years, the longest lasting almost 5 months. It began with my legs and was traveling up my body to my arms where my hands were beginning to claw. I had to learn to sit up on my own, grip things and stand and walk again (which is still not unaided.) I was very lucky to get the use of my limbs back because some sufferers don’t and live years in a way nobody should have to experience.

Some are often tube fed, very sensitive to light and don’t have the energy to speak or cooperate because of the severe fatigue and cognitive dysfunction. 

There is lack of awareness for ME in general. More so for how severe ME can actually get. It’s dangerous, it further damages the autoimmune system-putting heavy strain on the body, and it destroys your life. 

More people need to know.

#MyalgicEncephalomyelitis #severeME #chronicillness

Advertisements